Men Have Lupus, Too

You’ve probably heard the numbers—nine out of 10 people with lupus are female. But if you’re a man that has been diagnosed with lupus, the numbers don’t really matter. Your lupus is just as difficult to live with as a woman’s.

Like many men with lupus, you may struggle with the idea that you have a “woman’s disease.” But even though many more women than men develop lupus, your diagnosis has no connection to your manliness.

What it does mean is that that information on the disease that’s valuable to you may be harder to find. This issue of The Cooperative Corner is a good place to start, but you’ll want to talk to your doctor and outreach coordinator about more resources specifically for men with lupus.

What is lupus like for most men?
While no two cases of lupus are alike, most of the time the disease develops—and is treated—in the same way in men and women. In people under age 18 and over age 50, in fact, as many males as females have lupus.

Be sure to see your doctor regularly and take your medications on time each day. Take action if you notice:

chest pain when taking a deep breath

loss of feeling, or tingling, in the arms or legs

swollen ankles

seizures

blurred vision

foamy urine, blood in the urine, or difficulty urinating

fever

a sudden loss of appetite

mouth ulcers

pain or change of color in the fingers when it’s cold

new joint or muscle pain

After first being diagnosed, you will likely notice some changes in your physical abilities and the way you look. Pain and fatigue from lupus can cause frustrating limitations—you may have to cut back on heavy lifting and physically intensive work. And it can be difficult to deal with side effects from medicines for lupus, such as hair loss and weight gain.

Depression, exhaustion, and pain from lupus also can get in the way of sexual relations, though the disease will not likely affect your ability to father children.

Men typically also have to deal with living up to the expectations of being a physically strong and capable provider. Because lupus can cause such exhaustion and other physical problems—many of which can’t always be seen by others—people may unfairly call men with lupus weak or lazy. Not being able to work full-time because of illness can be especially hard.

Where can you go for answers?
There are many men in New York City and around the country dealing with the same difficult issues as you are—know that you are not alone, and, that there is support whenever you need it.

You may find it helpful to talk to a counselor or join a support group for men with lupus in your area. Lupus Cooperative of New York outreach coordinators are here for you, to talk about what you’re going through and link you to the most up-to-date expert information.